OLATHE, Kan. - You might never have heard of the number one genetic cause of death for infants.
Tony and Kristin Burks of Olathe are working to change that, telling the community about Spinal Muscular Atrophy.
It’s something their son Jadon was diagnosed with back in 2009.
“We were told there was nothing that could be done, to take him home and love him. That we would have 9 months to a year,” said mother Kristin Burks, who was reflecting on a conversation with doctors on her son’s two month birthday. “Our world that we had dreamed and hoped for was completely shattered."
According to data, Jadon has been beating the odds for years. This summer he will turn 9, when the life expectancy for most babies is 1 to 2 years after they are diagnosed.
Now Jadon, nicknamed “The Bug”, plays on a baseball team and is a third grade student at Rolling Ridge Elementary.
He’s inspiring hundreds to live fuller lives that, on Saturday included bearing frosty temperatures in a 5k, 10k or kids run to raise money for SMA research and Treatments.
"It’s brought us all closer together because we root for Jadon and want to find a cure for SMA,” explained Cathy Lentz, who was Jadon’s first teacher at Rolling Ridge.
Lentz said one of her favorite memories was when the entire class put on temporary bug tattoos for their friend Jadon.
“If there’s anything I could take away from Jadon and his family, they live every day, they’re in every moment,” explained Amy Vrban, the 5k race director.
The Burks established his namesake, the Jadon’s Hope Foundation in 2011, and one of its main goals is to raise awareness about the disease.
“We have a kid in our school named Jadon who has SMA,” explained Jaquelin Granados, who is a 5th grade student at Rolling Ridge.
In 2017 Missouri was the first state to mandate mandatory SMA screenings for newborns.
In Kansas screenings are not mandatory but come recommended since 90% of babies with the disease won’t live to see their second birthday.
“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain. We took that as our mantra. We knew were in a huge, huge storm. But we could find the joy,” said Kristin Burks.
Her son Jadon being the living proof, you can beat the odds — one day at a time.
Genetic testing is available so potential parents can find out if they carry the recessive trait for SMA. About 1 in 40 people are carriers.